1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS
A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME...
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Hillary Johnson has written again today.

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Kati, Oct 22, 2009.

  1. Kati

    Kati Patient in training

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    http://oslersweb.com/blog.htm

    Disability insurance UNUM did not fare too well on the stock market yesterday... Hmmmm! Surprise surprise. There is an action- and then there is a reaction. I suspect just a begining of the financial repercussion on the US (and likely Canadian) economy.

    And just so you know, CEO of the said disability comanies, us PWC, united we stand. Try to sleep well tonight... Who knows what's coming for you in the next few weeks, do the add up on how many people you turned down in the last 20 years, and what it's worth. Imagine how many lives you've changed. For the worse.

    Now we need an official reaction from te CDC. And governments. And blood banks. And doctors.
  2. Min

    Min Senior Member

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    Thank you! That's brilliant, what a wonderful woman.



    (U.K.'s Prof Simon Wessely is known to work for UNUM.)
  3. Koan

    Koan Be the change.

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    I hope this increases sales of Osler's Web.
  4. Advocate

    Advocate Senior Member

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    Anyone in the UK?

    http://www.me-cfs.org.au/node/448

    Go, Hillary!

    Is there anyone here who lives in the UK? Check out this article.

    http://www.me-cfs.org.au/node/448

    Who is this Professor Andrew Lloyd? Is he a member of the ME/CFS Society of NSW Inc., which posted his comments? I'm not familiar with the organizations in the UK. Is that society for us or against us?

    Professor Lloyd says his comments were made to arm readers with a "scientific" appraisal of the recent XMRV article in Science.

    He complains that in the past sophisticated lab techniques have been used to examine poorly characterized subjects. Yes. I agree. That's what the CDC has been doing. Their subjects include anyone who didn't go to bed early enough the night before.

    Then he tries to paint the Science study as one that used poorly characterized subjects. He criticizes the study because he can't tell if the patients in the study were comparable to 'typical' (his quotes) patients with CFS in the U.S. I say the last thing we would want is the CDC's "typical" patients.

    Why is this man pretending that he can't characterize the patients whose specimens were used in the study? The Science article is clear. It's true that it doesn't include the ages, sex and zip codes of the patients, but according to someone at the WPI those details were in the original paper submitted to the journal, and the editors said it wasn't necessary.

    The CDC is notorious for using vague patient samples. If the CDC tries to invalidate the Science article by arguing that the zip codes, ages and sex were not included, I hope the Science study authors will say, "We'll show you ours, if you'll show us yours."

    Ah, and since 20 of the CFS patients have lymphoma, Lloyd thinks the whole study should be called into question. Hey, they met the CFS criteria. They were probably treated like psychiatric cases until their lymphoma came along. Does Professor Lloyd have no scientific curiosity about the link between CFS and lymphoma? Doesn't that worry him just a tiny bit?

    He's trying to set a trap. He's saying that CFS MUST be the same as the disease linked to XMRV. If it's not, throw the study out, he says

    Then Professor Lloyd gets really crazy. He writes: "...the finding of a retrovirus in the blood would seem to be highly significant, however so called 'endogenous retroviruses' (ERVs) are actually found commonly in humans and generally cause no ill effects."

    With the word "commonly" he brushes aside the profound difference between the ubiquitous endogenous retroviruses and the three pathogenic retroviruses that are linked to disease. He doesn't mention that XMRV is a member of the same family of viruses as the AIDS virus.

    Lloyd says he has a research group. Surely no one in the CFS or ME communities gives him money! Does the ME/CFS Society of NSW Inc. give him money? Who gives him money?

    On their membership page the ME/CFS Society says, "...with so much information out there, it is often difficult to find the truth. The Society aims to provide the highest standard of up to date information from sources around the world."

    If they are interested in the truth, why did they print what Professor Lloyd wrote without commenting on it?

    I don't understand. I just looked at their brochure for health professionals, and it's pretty good. What is this Society's link to Lloyd? Is the organization run by volunteers, or are they paid?
  5. Koan

    Koan Be the change.

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    Hey Advocate,

    I believe NSW (New South Wales) is actually in Australia not the UK.

    The colonies are so confusing!
  6. starryeyes

    starryeyes Senior Member

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    Unum

    "UNUM is the largest disability insurer in the world, with ties to the shrink lobby in the UK and a 20-year commitment to making sure no one with "chronic fatigue syndrome" receives disability support." HJ

    That is great that she actually wrote this. Thank God for Hillary Johnson!

    Thanks for posting this Kati.

    Thanks for pointing out that NSW is in Australia, Koan. I was thinking UK too.

    Advocate,

    That Professor Andrew Lloyd is not on our side. Of that much I am certain. I agree with the bad science behind the comments in his post.

    tee
  7. Advocate

    Advocate Senior Member

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    Okay, so Professor Lloyd (of Australia) is not on our side. But here's someone who is. And here's the nice little essay he wrote in response to Hillary Johnson's NYT op-ed. He gave me permission to post it here, with attribution:
    ================

    Hi All...

    I wonder how much longer it will be before we see a similar Op-Ed regarding chronic Lyme disease. The author of this article, Hillary Johnson, wrote the bible on Chronic Fatigue Syndrome (CFS), "Osler's Web", and also wrote the forward for the bible on Lyme disease, "Cure Unknown".

    In "Osler's Web", Johnson painstakingly details the history of CFS, tracing the initial outbreaks, including patient case histories, and provides page after page of evidence describing the nasty medical politics that have long stood in the way of scientific progress.

    One could easily have taken her book, changed each occurrence of the word "CFS" to "Lyme", renamed a few of the key players, and it would have perfectly described both Lyme disease the entity and Lyme disease the medical/political controversy.

    What is particularly galling is how easily academics fall back on the "psychiatric" explanation when their research cannot conclusively determine the cause of an illness, even where there exists tremendous evidence to support a physiological cause, as in the case of both CFS and chronic Lyme disease.

    Such was the case with Syphillis at the turn of the last century. It took decades before doctors figured out it was actually caused by an infection and not mental illness or "bad blood". The same was true for ulcers, which were long blamed on stress until an Australian researcher proved otherwise.

    In the late 1970's and early 1980's I had my first taste of the medical flat earthers after contracting Crohn's disease, another illness that was, at the time, believed to result from stress. Even as a late teen, I knew my mind and body well enough to tell the doctors that their stress-induced theory was hogwash. My doctor and I had numerous major debates over that, in the end always agreeing to disagree.

    Today, while they have yet to determine the cause, doctors have at least concluded that there is a real biological cause (probably infectious) of Crohn's.

    And, of course, as is well known by readers of my lists, chronic Lyme disease is following a similar trajectory, with the added complication that it is far more profitable to the researchers, vaccine makers and insurance companies if Lyme disease remains defined as a "syndrome" of psychiatric origin.

    Perhaps the same holds true for CFS, whose patients have been treated with the same kind of disdain by the research community as well as by those agencies we most rely on to decipher medical mysteries - the NIH and CDC.

    -Steve

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  8. Aftermath

    Aftermath Guest

    Get Ready

    Koan is correct in that New South Wales (NSW) is in Australia.

    As much as it's still very early (we need to remain reserved, as the causal link between XMRV and ME/CFS has yet to be proven), people in the UK and Australia should be getting ready to take the fight to these people.

    If and when the study is successfully replicated--and better yet, if and when a causal link is proven...

    The local advocacy groups in these countries need to organize all-out demonstrations against people like Simon Wessley. You need to shame him to the point that he can no longer be seen in an academic setting. Picket his office, his house, etc. Signs, bullhorns, etc.

    This man must be humiliated and made to suffer like so many others did because of his closed-minded arrogance. I suggest this not as much for revenge, but to make an example of him to be seen by others in the medical and scientific establishments the next time an elusive illness comes about.

    Again, doing this now would be jumping the gun.

    Nonetheless, get ready.

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